In our study, we engaged people living in the Edmonton region in Alberta to elicit their views in a narrower area in health, viz. health technologies and their assessment. Specifically, we wanted to understand what the public felt were the important factors that governments should consider when determining which new technologies to select for health technology assessment (HTA).
Sixteen individuals living in the Edmonton area in Alberta were purposefully selected from a random sample of 1600 individuals to form a Citizens’ Jury. Jury sessions were held over 2 ½ days in March 2006, and were facilitated by two individuals who had been involved in the work of the Citizens’ Council of the National Institute of Health and Clinical Excellence in the United Kingdom.
On Day 1 (a half day session), expert witnesses gave presentations on the need to make tough but fair decisions on which technologies to fund publicly, and what HTA is, its situation in Canada, and how it might be used to support decision making. On Day 2 (full day), expert witnesses, who were senior administrators from the regional health authority and government, described how priority-setting decisions on new health technologies are made at various levels. Jurors were able to
On Day 3 (full day), this initial set of criteria was tested out, using a second scenario-based exercise, and a ranked final list generated. Two in-depth case studies were used: drug-eluting stents (compared to bare metal stents) for treating heart vessel disease, and the drug sildenafil for treating a rare condition, primary pulmonary hypertension (for which the only real option is lung transplantation). These were selected because they facilitated trade-off discussions over different aspects of the conditions and the technologies. For each technology, expert witnesses included a patient, a health care provider who treats the condition, a government policy maker and the manufacturer. Following the witnesses’ presentations, jurors were asked to select one of the two for assessment, and to explain his/her decision. They then met in small groups to discuss their rationales, and to rate the importance of each criterion. Finally, the Jury met as a whole to reach consensus ranking of the criteria.
At the end, the Jury agreed unanimously on a final set of 9 ranked criteria for setting HAT priorities. These were, in order:
Potential to benefit a number of people
Potential to extend life with quality
Potential to improve quality of life
Potential clinical benefit over existing technology
Lack of an alternative technology
Potential to detect a condition which, if treated early, averts costs in the future
Potential for additional applications
Potential to extend life
Completeness of data on adverse events
The jurors were administered surveys before the Jury was disbanded. They indicated that they valued the opportunity to become engaged in such a process, and expressed interest in participating in future Juries. They felt almost unanimously that the presentations, deliberations and small group discussions were very helpful in clarifying their views. They all felt that there was adequate time for the sessions, and all agreed that they were clearer about the issues as a result of the Jury. Almost all of them felt that there was a good balance in the information presented.
In the words of one juror, “This was an extraordinary opportunity to participate in an important approach to allow the general public to become better informed and to be actively involved in decision-making processes”.
The Citizens’ Jury is only one way of engaging the public. However, it differs from focus group and survey methods, because it is a deliberative approach. Members had the opportunity to learn new information, obtain details by questioning witnesses, and discussing and debating among each other, before coming to conclusions. In this way, it is a quite different approach to public engagement. It could be speculated that the same results could be obtained using focus groups, for example, but there are no studies comparing these methods.